1. Palliative care in the US
David J Casarett MD MA
Division of Geriatrics University of Pennsylvania

2. Outline Death and dying in the US What is a good death?
Problems/opportunities for improvement:
Pain and symptom management
Prognosis
Discussions/preferences
Solutions?
Hospice
Palliative care
Ideal palliative care in the US

3. Death and dying in the US: Cause of death (2000)
#1: Heart disease
#2: Cancer
#3: Cerebrovascular disease
#4: Chronic lower respiratory disease
#5: Unintentional injuries
#6: Diabetes
#7: Acute respiratory infection
#8: Alzheimer’s Disease
#9: Renal Failure
#10: Sepsis

4. Trajectories of functional decline
CHF/COPD
Cancer
Dementia

5. Death and dying in the US: Trajectories of illness (>65)
On average, >2 years of significant disability before death
Illness that will eventually be fatal is diagnosed about 3 years before death
80% of patients die after a lengthy period of decline that is either:
Steady, unidirectional (Dementia)
Intermittent with exacerbations (Heart failure, Emphysema, Coronary Artery Disease, Cancer)

6. Death and dying in the US: Costs
Lifespan (years)

7. Epidemiology: General points
Most deaths in the US occur in patients > 65 year old
Deaths are usually the result of chronic, progressive illness, particularly in older patients
Costs (borne by health system, patients, families) increase gradually over the last years of life

8. How well are we doing in ensuring a good death?
What is a good death?
How well are we doing in providing a good death?
Pain and symptom management
Discussing prognosis
Communication about goals and preferences

9. What is “a good death”?
Unique to each individual and dependent on culture (Have to ask patient)
But several clear themes:
Physical comfort
Psychological/emotional well-being
Spiritual peace
Dignity
Control
Time with family, closure

10. How well are we doing? Pain and symptom epidemiology
Multisite WHO collaborative study of cancer patients, Vaino et al 1996:
Moderate-severe pain:51%
Anorexia: 30%
Weakness: 25%
Constipation: 29%
Nausea: 20%
Dyspnea: 21%

11. How well are we doing? Pain and symptom management
Multisite inpatient SUPPORT study, Lynn:
Severe pain: 40%
Severe dyspnea: 40-50%
Confusion: 18%
Fatigue: 80%
Multisite ECOG cooperative study, Cleeland:
67% any pain
42% of those with pain had inadequate analgesic medications prescribed
Inadequate analgesia 3x as common among minorities

12. How well are we doing? Communication
44% of bereaved family members of elderly deceased cited communication about prognosis as very important, Hanson 1997
85% of cancer patients stated that they wanted all information, good and bad, Cassileth 1980

13. Challenges of estimating prognosis: How long will this patient live?
74 year old
Class IV heart failure (symptoms at rest)
Diabetes, renal failure
1-2 months

14. How accurate are we at prognostication?
Study
Median Estimate
Median
Actual
Estimate/
Parkes, 1972
4.5
2.0
1.8
Heyse-Moore,
1987 8 2 4
Forster, 1988 7
3.5
Christakis, 2000
N/A
5.3
Christakis N.A. Extent and Determinants of Error in Doctor’s Prognoses in Terminally Ill Patients: Prospective Cohort Study. BMJ 2000;320:469-72
343 physicians asked to give survival estimates for 468 terminally ill patients at time of referral to a hospice
20% accurate (within +/- 33% of actual survival
Overestimated by factor of 5.3

15. How good are we at communicating prognosis estimates?
326 patients referred to hospice by 258 physicians, Lamont 2001
Overestimated prognosis by factor of 1.2
Communicated an overestimated prognosis by factor of 3.5
Patients often do not understand their dx. In a study of 100 patients, 1/3 with mets thought that they had localized, and therefore treatable disease.
This study was undertaken to evaluate how often physicians favor communication of frank survival estimates to patients with terminal cancer
Interviewed physicians from different subspecialties who referred patients to hospice..when they were admitted to hospice, researchers called MD for phone interview

16. How well are we doing? Communication about preferences
SUPPORT study, SUPPORT investigators 1995:
47% of physicians knew when their patients wanted to avoid CPR
40% of patient/family-physician pairs discussed CPR
Medicare resource use study, Teno 2002:
20% of seriously ill Medicare patients said their care was too aggressive

17. Summary of problems and opportunities
Pain and other symptoms
Common
Often poorly managed
Uneven burden (non-white patient, older patients)
Prognosis
Inaccurate
Difficult to communicate
Communication
Inadequate attention to patient preferences
Missed opportunities to initiate discussions

18. Solutions Palliative care
Two ways of delivering palliative care in the US:
Hospice
Palliative consults

19. Palliative care
Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness…(WHO):
Symptom relief
Psychological and spiritual well-being
Maintains function
Applicable throughout serious illness

20. 2 definitions of palliative care
Narrow definition: “Comfort care”, focus only on providing comfort and relieving symptoms. Palliative care provided near the end of life when there are no further treatment options
Broad definition: WHO definition, holistic care provided throughout illness. Palliative care provided when there are no further treatment options and in parallel with active treatment.

21. 2 Definitions of palliative care:
Active treatment
Comfort care
Throughout illness
Diagnosis
Death

22. How can we improve end of life care?
Patient: 74 years old, CHF, diabetes.
Symptoms: Pain, dyspnea
Uncertainty about prognosis
Needs additional social support at home

23. Hospice care in the US Hospice industry:
~5,200 organizations nationwide
>1,300,000 patients/year
Interdisciplinary team (Physician, nurse, social worker, chaplain, volunteer)
Hospice services
Care provided in home, acute care, long term care
Medications related to hospice diagnosis
Respite care (5 consecutive days)
Home health aide services (2 hours/day)
Bereavement follow up and counseling for >1 year

24. Hospice eligibility
Prognosis of 6 months or less if the illness runs its usual course, according to 2 physicians
Referring MD
Hospice medical director
Hospice reimbursement often requires that additional criteria are met:
Developed by NHPCO
Promulgated by Fiscal Intermediaries
Complex, difficult for clinicians to remember and use effectively

25. Hospice: an ideal solution?
“Narrow”/Comfort care
Theoretical problems:
Eligibility is difficult to determine
Prognosis is challenging
Must give up access to many life-sustaining treatments:
ICU admission
Chemotherapy (unless it’s purely palliative)
Not CPR (DNR order not required)

26. Hospice: an ideal solution?
Uneven access (decreased hospice referrals among):
Younger patients
African Americans
Nursing home residents
Patients with non-cancer diagnoses

27. Hospice: an ideal solution?
Practical problems:
Late referrals
Median length of stay in hospice=21 days
1/3 referred in last week of life
10% referred in last 24 hours
Early referrals
6% of patients “outlive” the hospice benefit
Concerns (among physicians and hospices) of censure/non-payment for inappropriate referrals

28. Hospice summary Ideal source of care Extensive infrastructure
Interdisciplinary team
Range of benefits and services
Extensive infrastructure
Revenue stream
But:
Requires prognostic estimates
Penalties for inappropriate referrals
Result is very short lengths of stay and inadequate utilization

29. Alternative: Palliative consults
Consultation by a nurse or physician
Done in multiple settings:
Hospital (approximately 40% of hospitals)
Nursing home
Clinic
(Home)

30. Palliative consults: eligibility
Broad definition of eligibility
All patients, regardless of prognosis
Can continue to receive aggressive treatment

31. Palliative consults: Services
Services vary widely
Some combination of:
Physician
Nurse
Social worker
Chaplain

32. Palliative consults: Problems
Unlike hospice, no dedicated source of funding
Consult services supported financially by:
Some billing of insurance companies
Donations
Volunteer effort
“cost savings”
Lack of funding has limited growth

33. Summary of hospice and palliative care
Home/hospital/nursing home
Dedicated funding
Clear guidelines and requirements for services
System of quality measurement
Strict eligibility criteria
Palliative care
Mostly hospital, some nursing home
No dedicated funding
No guidelines and requirements for services
No system of quality measurement
Open eligibility criteria

34. Ideal palliative care?
Continuous—ensuring that all patients have access when they need care
Begins at diagnosis, and continues through to include bereavement support for family
Paid for like other medical care
Clear standards for high-quality care
Ideal palliative care doesn’t exist in the US

35. The future of palliative care in the US
Growing palliative consults:
Extension into nursing homes
Care for patients at home
Increasing access to hospice:
More patients benefiting
Patients enrolling earlier
Progress is slow but steady

36. Outline Death and dying in the US What is a good death?
Problems/opportunities for improvement:
Pain and symptom management
Prognosis
Discussions/preferences
Solutions?
Hospice
Palliative care
Ideal palliative care in the US